Healing: A Life with Chronic Illness by Marguerite Bouvard (University Press of New England)

Resident Scholar at the Brandeis University’s Women’s Studies Research Center, Marguerite Bouvard has authored twenty books in the fields of politics, psychology, women’s studies, poetry, spirituality, and has edited two anthologies, all connected by a concern for human rights and the human condition. A former professor of Political Science and Creative Writing before her illness, she was driven by intellectual curiosity and a concern for the less fortunate. However during the late 1980s, she could feel deterioration in stamina that deteriorated her intense work schedule as a conference presenter, a keynote speaker, a devoted and well-prepared teacher, as well as writing daily for hours on her current project. After years of puzzling and painful symptoms accompanied by unsympathetic physician’s diagnoses, she was diagnosed with interstitial cystitis, which is an inflammation and deterioration of the bladder lining. At present, there is no known cure, only remedies and cautions to alleviate the suffering; these include a severely restricted diet to avoid more damage to the bladder and complete rest to alleviate the crushing fatigue. Other immune disorders followed such as fibromyalgia, vulvodynia, and numerous allergies.

Once a globetrotting writer, she had to examine the quality of life she desired and what price she would pay for each decision. Early in the development of her illness, she needed to rest extensively for any trip or presentation in anticipation of the strain during her activities, and then extensively afterwards in the face of the inevitable lack of stamina that followed. Eating out in restaurants became a frustrating experience, because food choices became more and more restricted. These were not easy times for her and she describes them aptly:

“One day in my studio I reflected that being ill is living on the edge and that I constantly confronted my mortality, my limits. . . . I felt like someone who had been the unwilling recipient of a terrible tale, or who had stood in the middle of a crowded street caught in mortar fire. (I felt as if I were in Kosovo while people around me – walking down the street, working at their jobs, or simple having a good time – seemed like vacationers on the Riviera.)”

In the midst of these dark nights of the soul, her creative process seemed to answer a call, and “insights came unexpectedly flooding in, a pattern that would be repeated again and again.” Her mother, who continued working from her home to support her, even after a heart attack, inspired her. Bouvard describes how she “had always admired her [mother’s] courage . . . watching her deal with a male-oriented world at work and struggling to make ends meet as a single mother. “ This example inspired her to realize how her mother’s example was still with her as a guide and as a support. Additionally, the subject of her current book on the Argentinian Mothers of the Plaza, who saw their children “disappeared” and were murdered in acts of terrorism during the military dictatorship between 1976 and 1983. Unlike the academicians who populated Bouvard’ s world, these mothers used their feelings and their experiences as a basis for the actions of their lives. In light of this, Bouvard began to rethink her priorities. “It was the Mothers and not academic thinkers who revealed the political usefulness and the power of informed emotion.”

Applying this emphasis to her present condition, Bouvard concludes: “If ignoring the wisdom of affect was part of academic life, I found its absence blatant in the world of the ill . . . “ The Mothers experienced a chaotic existence with unpredictable results from their outrage; in the same way, Bouvard’ s illness made each day unpredictable depending on the vagaries of her night’s sleep, her fatigue, and her constant need to be near a bathroom. Now homebound by necessity, she lost her old spontaneity, but oddly enough, a new pattern emerged. Here is the next step in the discovery of her new creative process:

“I experienced a continuity in my work, for listening to music, or even reading my collection of art history books, was not only a respite but also a way of thinking about the problems I was having with my book. I too learned how I could work toward my goals in an unpredictable fashion.”

As she gave up her old pleasures of teaching, travelling to lecture, and intensely researching her current interest for a book, she now focused on the quality of her life: how she could glean pleasures from a night’s rest, a walk with her husband, and the unexpected birth of a good poem. Indeed it was her talent as a poet that helped her heal spiritually and emotionally. She credits her vision as a poet that helped her navigate life with chronic illness. She had to re-assemble the pieces of her life into a new meaningful whole.

After exhausting the established medical profession, she explored holistic approaches in established and alternative arenas. Eventually she learned a meditative way of experiencing the pain, or “sitting with pain,” that is allowing it to exist without fighting against its onslaught. She became involved in the national Interstitial Cystitis Organization as a fund-raiser and participant in support groups that corroborated her experiences and supplied invaluable tips for alleviating symptoms. She read books on spirituality by writers from the range of religions. According to her new insights, she writes that: “I learned a new perspective; although I was not able to change my circumstances, I could transform my attitudes.”